Said "dradel" has caused me quite a bit of mental anguish, I guess you could say. I can't seem to get back in my "groove." Which, for me, is the everyday humdrum of regular life. The expected, the mundane, the normal.

I just don't know normal anymore. And I certainly don't feel it.

Example #1: I was asked about going on a little trip with friends. Sounds fun! Very normal! Wait....can I even pretend to be able to plan for such a thing? This trip would be weeks away...

What in the world will I be doing weeks from now? Will I even be HOME? How can I plan for something weeks from now? For all I know, Michaela will crash on me again, and I'll be rushing to find babysitters, not enjoying a trip with friends.

I am weary just thinking about it.

Example #2: We went to the ER on Sunday. Why? Because something just wasn't right about Michaela. Again. And I honestly couldn't tell you what it was, but it was mostly gone by the time we got to B'Ham. All I know is that she was MESSED UP that morning: puking, walking like a drunk, weird glazed over eyes. Chief said her Depekote levels were too high. Thankfully, a quick fix. He sent us home (amazing....home on the same day...what a concept!)

But you better believe I was packed for a 2 week stay.

Oh, I'm good at it now. I probably packed everything I needed in like, 10 minutes.

This is just not normal. Paranoid, yes. Normal, no.

Example #3: I was actually thinking today about putting Asher in the local school Kindergarten class instead of homeschooling him myself. Why? Because he started Kindergarten last year, and you all know how that went.

Yeah...he got maybe 6 weeks in. So we have to do it again.

But I seriously don't know if I'm going to be around enough to teach him K5. The other children are fairly self-sufficient in their studies. They do video school (thank GOD for the foresight to pay for those courses!), and whoever is the closest adult can answer their quick and generally benign questions. But Kindergarten? That's a full-time job for me right there. When a child can't read, but is learning to, there is a LOT of work involved for the teacher/parent.

How do I know I will be able to get him through this grade? When will her "year of crisis" end? Why in the world am I considering sending one of my children to public school? I've NEVER wanted to send them off to school!

God, help me. I'm drowning in the Abnormal Sea of life.

I don't know how to do normal anymore!

***

So, I said all that to say, that things just are weird for me right now. I have lots of updates on Gabe and his condition, but I just can't get around to blogging about it yet. It's no big deal in a lot of ways, but it stresses me out, and I'll probably cry through the whole post, and y'all will look at me like I have 3 heads and wonder what in the world has gotten into me. Especially when you learn what I'm crying about.

Because it's honestly no big deal.

But I'm just not normal anymore, I tell you.

***

I also decided that I can't stand Blogger. HA! No, in all honesty, Blogger is great. A good platform to work with. But what I've come to learn over the past year, is that sometimes I just don't like to write. Sometimes I do, and that's fine. But sometimes I don't.

Yet, when your kid is sick and in the hospital for all eternity, not writing about it is somewhat cruel and unusual punishment for your family and friends who live all over God's green earth. It really isn't an option.

Well, unless you want to repeat yourself 100 times a day. Which, I do not.

But this blog has morphed into a creative outlet for me. A demanding, neurotic creative outlet. What I mean by that, is this: I can't stand to post on here unless the writing is top-notch. It has to be right. Every time.

I don't know how or why that started, but it has, and it can be very binding and stressful. These posts can take some serious time. Time that I simply don't have.

And with Michaela, things can and do change so quickly, that this format is unpractical for me to keep everyone updated.

I used Facebook for a while, because that was a really quick and painless way to get the updates out. However, I soon learned that many people actually have a profound distaste for all things Facebook. People who were pining to know what the latest news was.

So I added a Twitter account. Which also updates Facebook simultaneously (ahhhh...the joys of modern technology!).

But then I got too bound by Twitter's 140 character limit. YOU try explaining some of this complex stuff in 140 characters! It's insanely difficult!

So now, I've come up with a better solution: Caringbridge. It's a medical journal platform that can keep everyone updated on Michaela's health whenever I have news to share.

And you know what? I can update it from my iPad or iPod, and I could care LESS if there's typos or minor mis-spellings. (Yes, the blatent ones are still a huge no-no....just.can't.do.it!) It's just a quick and easy way to write as little or as much as I need to about what's going on that moment.

No storytelling or creative writing needed (although you know I can't get away from that completely...it's just my nature). I just say, "Hey guys, this is what's up right now. We're waiting on labs."

The end. Period.

Ahhhhh....simplistic.

Yeah, I know it's kinda desperate. But right now, I'm just busy trying to make sure that little dradel doesn't tip tooooo far over. And in the meantime, I'm making things easier for me, so my head can stay in the game.

Because really, right now, my brain is fried. Toast.

I'm just not normal anymore. So forgive the desperation. But visit us over on Caringbridge anyhow...because normal will come back someday, and if I don't post about it here, it'll be over there :)

Saturday, April 09, 2011

When I was in high school I took chemistry like everyone else did. Science was my strength, and the thought of actually manipulating things in the lab appealed to me.

Our teacher was a man by the name of Currier. A short, skinny, curmudgeon of a man, Mr. Currier personified grumpy, but he knew his molecules. He quickly gained the nickname "Moody"...not "Mr. Moody" mind you, just plain "Moody"...as he would grumble and gripe his way through class each day.

And despite his disparaging name, Moody seemed to like the way our class would make him smile in the face of his every effort to frown. We may have even got him laughing for a bit, just for him to get all grumpy and holler at us for the chuckle. He was the type of person that you could tell was soft and --gasp!-- cuddly down under layers and layers of prehistoric rock.

I really loved Moody. He probably was one of my favorite teachers in school. He helped me to even like the complex nature of chemistry. Which, beside my scientific leanings, really whipped my backside and confused me to no end. I very much looked forward to his class and dealing with his sour antics.

But I didn't get the best grades. I definitely wasn't going to be a chemist someday.

I wish I could tell you where that man is now, but for all I know, he passed away years ago.

The concepts of high school chemistry have been at the forefront of my mind lately. I remember analyzing structures of molecules and everyday substances, trying to figure out how the atoms would dance with each other, or how they wouldn't. Studying cryptic lines and geometric figures with little letter/number notations all over them. Trying to make sense of things I couldn't see, but just had to trust really worked the way Moody was describing.

Trusting in what you can't see, can be an important life lesson.

****

Have you ever picked up a prescription at the pharmacy and opened up the pamphlet that comes in the box? Have you ever noticed that it opens up into a huge sheet that can cover an entire dining room table? Isn't it amazing how much monotonous and boring information they can squeeze onto that paper?

Did you realize that there are chemical diagrams on those things?

I have.

And truth be known, I have READ a prescription pamphlet or two in the last 10 years.

Ya, I know. I'm a geek.

But it's what's ON those little (huge!) pamphlets that is the kicker. All the side effects, all the interactions to watch out for, all the ways it affects your body. The info is vast and overwhelming, and frankly, can be quite scary.

I just usually throw them in the trash.

Trusting in what you DON'T see, can be an important life lesson as well.

****

Back when I started having kids, you wouldn't hardly catch me giving them medicine. Not that I was diametrically opposed to medicine, per se, but I just didn't see the need for it in many of the circumstances people would use it for. I mean, it started before I had kids. I went to birthing classes that focused on "natural labor and delivery without drugs." It just was important to me to keep chemicals out of my kids' systems, and I wouldn't even use some common drugs myself.

And I trust that I wasn't a snob about it. I don't remember being so incredibly die-hard that I would criticize others if they chose differently than me. It was more a personal thing, a mantra, a way of thinking that I subscribed to.

Some of those convictions are still with me today. For example, I haven't owned a thermometer since 2003 when my dog destroyed our last one. Actually, I just bought one a few weeks ago. But seriously, it's the first one since Libby was a baby. The reason being, is because I just didn't feel that I had a need for it. I don't give my kids medicine until they show more signs than a fever, so why care if they have a low-grade fever? And by the time they have a higher one, it's obvious. I mean REALLY obvious. So then, I give them a little something to help them sleep or not suffer too much. But otherwise, a low-grade temp is not on my radar as far as meds go.

I can have a bottle of children's Tylenol in the pantry for a year before it gets used again. Easily.

And we go years at a time without so much as an antibiotic in the house. So yeah, this is just my mentality on it. It's kinda how I think and how I handle these things.

I mean, think about it: what really IS in these chemicals we're putting in our kids' bodies?

I wish Moody were here to break it down for me, because I sure have a hard time feeling ok with it all.

****

Which leads me to my point:

I am feeling REALLY irritated with the fact that I now have not one, but TWO kids on serious levels of medication. Michaela has been on constant meds since 2000 (much to my perpetual annoyance), and Gabe just started his new regimen that rivals his sister's.

Quick fact:

When Michaela first started having seizures, they put her on a drug called Tegretol. Tegretol needs to be increased steadily until you reach the right dose for your height and weight. Back then, they increased the dose 3 times over a period of about 3 weeks.

We saw negative side effects after the first increase. She started not walking right; bumping into walls.

And I about freaked. I remember vividly where I was when I called her pediatrician and hollered at the nurse who took my call, "I don't even give my kids TYLENOL! I am not interested in giving her chemicals that are going to hurt her!!"

She tried to smooth over my ruffled feathers, but I was adamant. We would NOT be upping the dose anymore. The seizures were controlled at the previous dosage, and that's where we would stay, no further discussion.

That didn't last long.

I was soooo naive.

****

And now, here we are, over 10 years later, and the child "I don't give Tylenol to" is now so jacked up on meds that I don't even see the real child that much anymore. She's on 3 seizure meds, 2 anti-psychotics, a prescription laxative, and a chemical to keep her g-tube stoma healthy. Nevermind the vitamin that she really needs (despite her balanced diet) in order to help with side effects. Or the creams and nasal sprays to counter-act side effects as well.

Chemicals.

Chemistry.

C15H12H2O2

Arg. It rubs me raw.

****

And then there's Gabe. With his hacking episodes, we've now seen our pediatrician more times than I can count, a pulmonologist, a speech pathologist, a gastroenterologist, an otolaryngologist, and soon an allergist/immunologist. He's had 2 barium swallow studies, an upper endoscopy, and in May will have his second bronchoscopy. Never mind the x-rays. I can't remember how many anymore.

Between Michaela's issues, and all these doctors scratching their collective heads about what's wrong with Gabe, we've got half a pharmacy at my house: he alone is on 2 different breathing treatments for asthma, a reflux med, an allergy med, a sinus med, and next week he goes on a long-term antibiotic for chronic sinusitis.

The Lord only knows what the allergist will find.

God help me.

Did you count it all?

15.

15 different meds/therapies that these two children need daily.

I'm thinking that I need some Tylenol.

****

And you're probably thinking, "Now hold on, Kelly. 15 seems like a lot, but there are lots of people out there that take that much all by themselves! You shouldn't complain!"

Yes, I know that's right. In fact, I personally know someone, a young child, that likely takes more meds than both of my kids combined. I'm not downplaying the severity of other's daily regimens.

I know it could be worse.

But I'm venting here. Me. I'm venting about MY situation.

First of all, I don't like drugs for me.

Secondly, I don't like drugs in my kids.

Thirdly, at the very least, I don't like multiple drugs in my kids. Polypharm and I don't get along very well. Ok, how about "at all."

Lastly, I have two children on so many drugs that I have to write everything down to keep track!

This is annoying. This is exasperating. This is maybe not even called for.

And frankly, I'm fairly Moody over it.

****

But I don't have much choice in the matter. So we do blood draws to make sure Michaela's liver isn't about to choke on us, or that the levels of drugs in her are not at toxic levels.

Ummmm, that's up for debate. I would argue that they ARE.

But I'm no chemist.

****

And with Gabe, we keep trying something, anything, to see if this kid can get some relief. Maybe this will work. Maybe that will work. Something. Anything.

Everything?

Arg.

And then how do we know which one IS working when it works? And not the other which one?

Saturday, March 12, 2011

Michaela and I have a nighttime routine. Thankfully, she’s not extremely attached to it, or nights out without me would be horrific. But when it’s a normal night, we do the same things to get her ready for bed. She’ll even remind me if I miss a step.

Get undressed and into PJs.

Pull down the cover of her bed.

Arrange a wet pad for midnight accidents.

She gets halfway into the bed, and won’t lay down until I take off any shoes or socks she’s still wearing.

Take off the VNS ankle bracelet and lay it on the bedside table.

“Mama, the pillow...”

Oh, right, I forgot a drool bib for the pillow (so she doesn’t lay in a puddle).

She flops onto her right side and I cover her up.

Then I mix the meds. 3 pills get crushed, 2 liquid meds. Mix it all up in a vial with some water and flush it down her g-tube.

Re-cover her.

Pull up the railings.

Stuff pillows into the railings for padding.

Turn on her radio.

Turn on her breathing monitor. It starts to bip with the rhythmic movement of her chest.

Then comes my favorite part. I’ll pray for her, usually saying much of the same things I’ve been saying for years, “Thank you God for a good day. Please let her sleep with no seizures tonight. Please give her a good day tomorrow.” She often will say the closing “Amen,” and I’ll lean in to kiss her on the left, soft, puffy exposed cheek.

But my absolute favorite part is right before the lights go out, but after the kiss. The way she lays, the left side of her neck is exposed. I like to bury my face there and just drink her in. All the familiar smells of just her. It’s such a soft spot that I have no doubt I could easily fall asleep there. I still can’t believe I survived a month without this routine. Without this particular ritual.

“You love me Mama?”

“Yes, baby. Mama loves you.”

A couple more kisses on that squishy cheek....so close to the scar where the VNS was placed...but far enough away to feel like newborn skin. A couple more deep breaths of that familiar smell, and I finally pull away.

Saturday, February 26, 2011

For the record, I have always been very thankful for the health of my children. I have 5 extremely healthy children, who rarely even get colds. To date, Noah is STILL the only child to ever have an ear infection in his life---and it happened only one time, at that. Can you believe that? How many classrooms of children could claim 4 out of 5 haven't had a simple ear infection? That's so incredible.

Also for the record, Michaela is fairly healthy herself. She rarely gets any sort of cold, flu, or infection either. The first time she ever got an antibiotic was when she got the flu 2 years ago, when she was 11. That's a pretty good track record! Many handicapped children are susceptible to anything and everything that comes their way. Seizure kids usually get hit pretty hard, the sickness symptoms being compounded by the breakthrough seizures that rear their ugly head.

But she does better than most, and is just very healthy everywhere other than her brain.

So, I've made it a point to be grateful and thankful--vocally thankful--for how much I DON'T have to worry about, with the other children.

****

But sometimes, life throws you a curveball.

Such is the situation with Gabe.

If you follow me on Twitter or Facebook, then you already know what I'm talking about. But in case you're not into those things, here's the scoop:

Gabe coughs.

A LOT.

The vast majority of his coughing happens during meals. He's just going on his merry way, enjoying whatever is on the menu that day, when the hacking starts. Oh, sometimes it's just a little "cough, cough," but about every meal it turns into a "HACK HACK HACK." And this can be so forceful that he can eventually loose his meal.

And break blood vessels in his face.

And make him decide that he doesn't really want to eat THAT badly.

Here's what he ate one day recently (his brother's plate...he doesn't eat this much!)...

And then this is what it did to him...

Poor guy...

I had been hearing about Gabe's issue more and more while I was gone to Children's. People were babysitting him, and noticing that something just wasn't right. Whether he was breathing really bad, or he was just coughing too much, he just wasn't right....and have I had this checked out?

Well, yes, as a matter of fact, I have.

****

Two year ago, it started. I told our pediatrician about it after a few months, and he agreed with me: it sounds like he's aspirating when he eats. His food goes down the wrong pipe. We tried anti-reflux medication (another reason people cough), and when that didn't work, aspiration just seemed reasonable.

Now, just so you know, I already have one child that aspirates (Michaela) and I'm pretty familiar with how it looks and sounds. I was pretty sure that I now had 2 kids with the same problem on my hands. The big kicker was this: why would an otherwise normal child be aspirating? Michaela's reason is easy: neurological dysfunction. But Gabe is neurologically "intact" and really shouldn't have this issue unless there's some mechanical issue going on.

So, the pediatrician referred us for a swallow study.

And would you believe it, he went through that study (where you eat in front of an x-ray machine) and didn't cough ONE TIME?

Go figure...

So, from all appearances, my hacking child was perfectly fine. And no aspiration to speak of.

But the pediatrician wasn't quite satisfied (good thing, because neither was I), and sent us to a pulmonologist. Who in turn looked at the swallow study, learned that Gabe was the baby of 6 children, and proceeded to take my words out of context and label his coughing as "a behavioral problem." Seriously. He didn't even really examine him. That doc just decided that he was looking for attention, that I must be babying him too much, and that since he passed the barium swallow, nothing was truly wrong.

I was flabbergasted.

I asked him, "So, you're pretty much saying that the only way I can prove that there's something wrong, is to wait until he gets aspiration pneumonia??"

And he said, "I guess. I think you should just ignore it, and he'll stop."

I completely disagreed with his opinion. I knew my kid. I didn't baby him too much. I didn't fawn all over him when he coughed. If anything, I got on his case because he would get to the point of puking all over the place. So I would try to get him to stop coughing, but I wouldn't pamper him because of it. I am the Queen of trying not to "make mountains out of molehills" and Gabe's cough was no different.

But, in order to just suck it up, I said to myself, "Ok, fine. Maybe he's right. We'll prove out his theory. I will completely ignore Gabe and his coughing, and we'll see if he stops 'looking for attention.'"

And that's where I left it...

...over a year ago.

****

But with me gone so much over those 3 months, I wasn't around to "ignore" him. And others, especially my Mom, were a little concerned with his problem.

When I got home for good, and after hearing their concerns, I realized that it had been a good, long while since I had started ignoring the coughing. It was long enough. This needed to be addressed.

Because, like I suspected, he wasn't getting attention, and he wasn't looking for any either.

There was something wrong with my son.

****

So, a couple of weeks ago, I brought him back in to the pediatrician. Again, in spite of the good

swallow study, he agreed with me that it sounds a lot like he's aspirating.

So we redid the study.

And, same thing: Everything looks good. He didn't even cough.

But, the speech pathologist who was there to administer the test, was the same one we had the time previous, and she remembered Gabe. She was pretty irritated that he was back for the same problem, and that it hadn't been addressed fully. And even though the test came back fine, she felt like something had to be done. She pretty much put her foot down and said that something WOULD be done. She let him finish his meal (the test is only about 10 minutes long, and he had more food to eat) so she could watch him further. Sure enough, he coughed. He didn't hack, but she was satisfied that he was indeed coughing when he ate. And that he really didn't want to eat because of it.

In her mind, it started to make sense...

****

See, she knew from his history that he had aspirated a peanut into his left lung 2 years ago. He had to have surgery in order to extract it. The whole episode wasn't the most pleasant thing a child could go through. And he was such a little guy (who is terribly shy), that she was starting to think that his body had developed a habit of coughing to protect that airway.

She knows from her experience, that some people will have these traumatic events, and they will start to instinctively cough. It's their brain's way of keeping that problem from happening again. However, it's an inappropriate response because it's generally not needed--they're not really aspirating. And in an older child or adult, they can retrain their brain to not cough every time they go to eat something. They "talk" themselves out of doing it. And after a while, the cough is a dead issue.

But with Gabe, he wasn't capable of retraining his brain to not cough. He was too young, and not verbal enough to even put into words what was bothering him, so the cough just became a habit his brain formed.

It's not something he has control over. It's not something he's trying to do. It just happens automatically.

But it's not necessary. It has no true purpose.

Yet, it's very much there, and it's only going to get worse as he gets older. He already can have an aversion to eating because of all the coughing (and puking), and he doesn't need that to get even more pronounced.

Well, it's her theory.

Sounds pretty legit to me.

****

So, as of right now, that speech pathologist got us hooked up with another therapist who specializes in correcting these unnecessary coughing spells. Can you believe they actually have someone who does that? Must be a popular problem!

We also have an appointment with a Gastroenterologist to rule out reflux. That was the pediatrician's idea. I think it's possible, at this point, but he has no history of reflux--not even as a baby--and he never responded to the anti-reflux meds that we tried when this all started.

But we'll see. He seems to have more symptoms of reflux now than he did even 2 weeks ago.

And even if that's not it, I totally can see him having that psychogenic cough the therapist described. He doesn't completely fall into that definition either, but it sounds close enough to be the likely culprit.

Either way, I'm glad that something is being done to help this problem. Poor Gabe. He just looks so pitiful when it happens. That video was just the tail end of a very forceful coughing fit he had one day a couple of weeks ago. I videotaped it in order to prove what I was seeing, even if the doctors never got the chance to see it first hand. In the clip, it all started from a chip he ate. However, it usually isn't something so pointy and "cough inducing." He hacks on everything from applesauce to chicken.

Sigh.

If it isn't one thing!

But I trust he'll be doing better by the end of March, when he goes through therapy and sees the GI doc.

Maybe then the hacking will be a thing of the past, instead of something that's been bothering him for over half his life.

Thursday, February 10, 2011

I was reading a commentary tonight by someone who is known to be an incredibly deep thinker.

Those who know me, would say the same about me as well. I tend to think to a fault. Analyzing the ins and outs of this, that, and the other; without any prejudice for the importance of the matter. I am just as likely to think deeply about folding laundry as I am about the meaning of life.

And the questions that spawn from this thinking...

Oy vey.

It's pretty obvious that when your pastor nicknames you "The Question Box," you have a serious personality trait.

Perhaps, even, a strength that is hard for others to recognize.

In my case, I strongly believe that my need to question what's going on around me is a true gift. It is the ability to see outside of the box. The realization that things aren't always as they appear. And especially the catalyst with which I learn. The day I stop asking questions, is the day that I will be in my grave. But it hasn't always been a part of me that I joyfully embrace.

I've been mocked for it.

Hailed for it.

Scorned for it.

And relied on for it.

Which sends terrible mixed signals. On one hand, I can get phone calls asking me to reiterate something I learned, when I was the only one bold enough to look stupid enough to ask the question in the first place. On the other hand, I've been ridiculed for daring to question something when everyone around me was stewing about that very thing.

So there are consequences to asking questions. I know that.

Most of the time, I can honestly say, I don't ask the question unless I'm ready to deal with the answer. Whether it be to my liking or not. Whether I determine it to be the truth or not. If I can't handle the answer at that time, then I keep my question to myself.

Even information can be acquired in moderation.

I don't need to have a need to know...right now...all the time.

****

"It occurs to me that we should treat answers like pronouns, connectors that get us to the next question." *

Mr. Haseltine's post about asking questions, and the need for answers to be springboards to the next question, is something worth chewing on. Personally, I can justify the concept. I can see the beauty and humanity and true need for endless questions. The drive to continue to wonder, to hope, to strive in the middle of this journey we call "life."

However, in the same breath, I can also see the destruction that accompanies endless questioning.

Because see, when we don't ever find a place to stop, a time to accept, then we are destroying ourselves mentally, emotionally, and spiritually. We are putting ourselves in a position to never acknowledge that there IS a final answer. Which creates a never ending loop of mistrust, skepticism, and even self-divinity. The place where we can no longer come to a conclusion on a matter, is the time where we are our own god. We can't trust any one to have the answer, no one can find the end of a matter, therefore, it is still left to be discovered.

Discovered by whom? Why, ourselves, of course, because that is the only one we can depend on when it comes down to it, right? If this one or that one can't have a definitive answer for something, then who does?

Can God?

And if He does, then some answers are already made available. They can be known. That has to be definite. Infinite. If it isn't, then God is not who He says He is.

There is wisdom, and knowledge, and truth to be had. There always has been.

****

"On a gut level, it is why the surety with which some people navigate complex issues of life feels foreign, even fabricated to me. I am skeptical of people who “have it figured out.” "

Yet, there has to be something that can be figured out. Wouldn't you agree? Let's get basic:

I am a girl.

Period. End of story. There is no further question on that fact. Perhaps YOU aren't too sure about what YOU are, but in my case, there is only one answer:

Girl.

But, let's get deeper:

The earth is round.

Well, there was a time when this was a controversial topic. There wasn't a correct answer to be had. And those who thought they had it "figured out" were either proven to be very right, or very wrong. But Neil Armstrong stood on the Moon, and could conclusively say that the Earth is indeed round, and not flat as was previously assumed.

So this is a known fact. Again, there is no questioning this statement. And if some gentleman from a foreign tribe located deep in the mountains of Laos argues vehemently with me on this point, because he's never been taught otherwise...

...well, that doesn't change the truth of the matter.

In this case, I am the one who has it "all figured out." I am the one with supreme knowledge. With the indisputable fact. There is nothing prideful about that. I cannot change it, rearrange it, or dismantle it even if I tried. You know, it's a matter of "don't shoot the messenger!"

So, let's take it up a few notches:

There is a right way.

Oh, now, this is a biggie. And I believe Mr. Haseltine had concepts of this depth in mind when he wrote what he did. That such philosophical and intangible conclusions should not, could not be broken down into something so meagerly simple. If we make statements of this brand of finality, are we truly being pompous, or are we simply being the messenger?

I would argue for both.

In a court of law, you cannot take the stand to testify on a matter where you have no experience. If you do, you will quickly be judged incompetent and scorned profusely.

Yet, this is how so many of these deep questions are answered. In arrogance. Spit around by drunkards who try to weave and bobble their way into Common Acceptance. You cannot take what they say as Truth, even though they have it "figured out." Credibility is key.

And if that is the case, then credibility is trust. Trust is the ability to accept. Acceptance holds weight now. And messengers can be what they say they are, and can say they are what they have been:

Owners of Answers.

This is not something to shy away from.

****

"There is an art to, “the next question.” It is mystery that fuels passion. It is awe and wonder at the unknown that draws our gaze heavenward."

Above all, I truly believe that there are great questions to be asked, and truly, even greater answers to be had. Both have their rightful place: questions not too arrogant to keep us in a constant state of unknown, and answers not too dismissive to keep us from questioning when it really matters. I can't see why we can't continue to question things, as long as we are also willing to say, "Ok, that settles it." when it is spiritually, mentally, and emotionally pivotal.

And on that note, sometimes those things are vastly different from one person to the next. One person's need to look deeper, does not trump another's need to set a standard. Or vice versa. This is where respect comes into play. I can respect the fact that you haven't settled on an answer yet, if you respect the fact that I have, and will act accordingly.

Because no matter how deep the concept, how unfathomable the mindset, it can still be as plain as the nose on their face---to someone. And they can't change that. Just like I can't change the undeniable truth that I am a girl. Please don't try to change my mind. I have the answer. But if you would like to disagree, I will try to patiently hear out your theory, but I doubt there will be enough exchange of ideas to warrant more questioning on my part.

When we stop acknowledging the fact that we know something to be true, then we also deny the fact that there is a God who designed Truth in the first place. It doesn't mean that there isn't mystery and wonder enough to sustain a person for a lifetime. It simply means that we are Ok...

...with the answers that we are not responsible for establishing,

...and the questions that we were created to be asking.

*With all due respect to Mr. Haseltine, but I am assuming he meant "conjunctions" instead of "pronouns." Conjunctions connect ideas of thought within a sentence, whereas pronouns are specific nouns used to replace a noun by another name. As a self-proclaimed grammarphile, I was a little confused at first, but when I figured out what he meant, the thought's significance rang true.

Monday, January 31, 2011

I can see her again. I can see her. Her eyes are bright again. Her face lights up and her smile is genuine. She talks with clarity. Civil clarity.

Her mind is clear.

She is back.

The issues we are currently dealing with, pale in comparison to what we saw in the hospital. It took some time, but she pulled out of that zombie-like state, and now only deals with some very benign handicaps.

Mainly, one of her meds causes a slight-to-pronounced tremor, depending on the time of day. She can be very unsteady. Let’s just say she can quake like the San Andreas. But it’s not all the time, and it’s not always that bad. Sometimes, it’s really not a big deal. She works with it. I don’t feel comfortable with her walking around on her own yet, and we use her wheelchair in all public places, but it could be worse. She could be completely immobile, like she was in the hospital. Also, when we first came home, she would sleep constantly. She would be alert for a brief time each morning until she got her meds, and then she was like jello. I learned the hard way to put her to bed or in her wheelchair before I dosed her--she was that lethargic, almost within minutes. Then she would sleep all day. But now, she appears to have gotten used to it more. If we’re out and about, she stays awake a whole lot longer, and can even move purposefully (as opposed to like jello) after being dosed. The improvement is very obvious.

Surprisingly, she still hallucinates slightly. But thankfully, her voice has gotten markedly quieter since she came home and started talking again. I have to strain to hear her sometimes, which is a HUGE difference from the past....oh, I dunno, year or so? So the slight hallucinating every so often is really no big deal. Definitely nothing I would make an issue of. She was getting too hyper and manic at the beginning of last week, to the point where she even ripped her g-tube out. We quickly upped one of her meds, and all is calm again. I will take calmly talking to invisible people over mania any day. Like the background seizure activity she has lived with for many years, this psychotic stuff might always be just in the background at the least. If so, background is fine. All-encompassing is not. Hopefully, “all-encompassing” will be a thing of the past.

There is also a cough that interrupts her when she eats, and we just started seeing her pupils dilate unevenly (although Chris says he’s seen it before). The cough is a well-known side-effect of the VNS. Unfortunately for Boo, she already deals with aspiration when she eats, which makes her cough. Add the “VNS cough” and it makes for some messy meals. I’m just keeping my eyes on it for now, to make sure the problem isn’t getting worse. So far, it’s only an annoyance. As far as the pupils go, uneven pupils can be a sign of some pretty nasty stuff. Hers only do it intermittently. Some people’s eyes just do it without any problem, however; and we hope that hers is just a by-product of the trauma her brain has been through and not a new development. Chief warned us that if she gets headaches or vomits with it, or if one eye “does it’s own thing,” we should be going to the ER. Thankfully, I don’t think it will be an issue.

Overall, what do I have to complain about? My girl is back from the depths of some pretty miserable stuff. I was on the verge of putting her in an institution. Then for all intents and purposes, it looked like she would exist in a stupor; just an invalid. Neither came to pass.

I know mercy when I see it.

And I’m grateful.

****

It is Well...

...with me.

I get to be full-time Mommy again. A full-time wife.

I get to be home.

Home...It represents so many things.

Everyone who knows how long I was gone, who knows I'm a housewife, who hears that I homeschool, and especially who hears of how many children I have, knows instinctively that I MUST have been anxious to get back to my life.

They were right.

My world revolves around this address. My husband, so diligent to work a full-time job while attending the University as a full-time engineering senior. My 5 other children, ages 4-11, constantly growing, learning, changing--needing a Mama. My little farmhouse, seemingly sagging and moaning under the lack of routine care and maintenance. My church family, temporarily taking my place in many, many ways.

It's all here, just turning and twisting on an off-kilter axis without me.

I've built my life juggling these balls, and I don't regret setting them in motion. There is something so satisfying about building your life around relationships and investing your happiness in other people. Yes, there are risks involved in that. I understand the consequences.

But I could never have it any other way.

Because see, there is Michaela. The other ball in my act. Slightly un-round, slightly unbalanced, but just as vibrant as the others. I take great care to toss her in the mix with as much strength as every other ball. Even though it takes more effort, more skill...

...more risk.

Someday, she may just fall and break my heart.

But it will have been worth every moment.

I would never have it any other way.

****

It is Well...

...with my soul.

When you go through things that try you, that stretch you, it seems as though people expect your very foundation to be rocked. That you will either dig deep and learn a true lesson of life; turn to God, or you will curse God and move in a different direction.

And, perhaps that happens for a lot of people.

But I can honestly say, that is not my testimony.

On either count.

I don’t think there was one moment when my faith was tried. No, I KNOW there wasn’t one moment. Not one.

Did things end up the way I thought they would? Nope.

That doesn’t bother me.

Did I expect something exciting in Michaela’s condition at the end of it all? Yes. I could see a different outcome. A “good” coming from the “bad.”

But I didn’t pivot anything on it. Not my faith, not my trust, not my foundation.

I decided a long time ago that I would look for the good in situations and focus on that. “Good” is subjective. It varies. It changes. If the good that presented itself yesterday, is not available today, that doesn’t mean it wasn’t good yesterday. It was still the thing to focus on for that day.

But when things weren’t good, and I even felt somewhat in despair, I always knew that it was simply temporary. A door I needed to go through in the journey. And God still fits into all of that.

Even though those types of things cause people to negate God--when things change for the worse. For me, it does nothing more than reiterate His omniscience. From my perspective, life is like a chess game, and God is undefeated. He knows so many moves ahead of the present, that I couldn’t possibly argue with Him on His choice of placement. I can often see the move as it is and see the intelligence in it, even when it turns out to not lead to another move I imagined.

And then sometimes, the move makes no sense at all.

But the fact still remains: my perspective is altogether at a disadvantage. And I don’t question Him.

At all.

People often blame God for the bad, and despise Him for not correcting it. And then some people will criticize medicine, and shout it’s shortcomings from the rooftops. But I see the Divine in the midst of both scenarios, and can hardly say anything demeaning about either one.

Even when I’ve experienced both. It simply doesn’t move me.

Albert Einstein once said, “Science without religion is [crippled]. Religion without science is blind.”

I choose to believe that God has put a lot of time and thought into the science we base our daily existence on. The medicine we practice. The whole of what we know today would not be ours to claim if it weren’t for God’s generous outpouring of knowledge, skill, and tenacity. He’s allowed humankind to know what we know, and to use what we know for our good. Science, medicine, is a gift.

But it is manipulated by imperfect hands. Scientists, or doctors, are not gods. They are at the mercy of their own limitations. Limitations set by God.

So, in this light, I will not allow myself to get bent out of shape at the “grass roots level” when things don’t go the way I had planned. Science has done wonderful things for Michaela. God has allowed it, and I’m grateful. But when science, and even great human minds, can do nothing for Michaela, I refuse to let that rock me.

God can always do something for her.

And if He chooses not to, so be it. That will not rock me either.

I accept the fact that the next move on the board is unclear to me, and I’m perfectly ok with whatever position He takes next. I continue to make my own moves, relying on plays He has pointed out in the past, or holes in the board that seem to open up. Some based on science, and some based on faith.

When it comes down to it, however, I know He will win the game. Yet, I’m enjoying playing with Him anyway.

Because someday, I believe that I will clearly see that He was playing with MY pieces all along.

****

I know I can tend to wax philosophical, and definitely allegorical, so here’s the words to a song that just seems to simply sum it all up:

I’m running back to Your promises

One more timeLord, that’s all I can hold on toI gotta say this has taken me by surprise

But nothing surprises YouBefore a heartache can ever touch my lifeIt has to go through Your handsAnd even though I keep asking why, I keep asking why

No matter what, I’m gonna love YouNo matter what, I’m gonna need YouI know that You can find a way to keep me from the painBut if not, if not, I’ll trust You

No matter what, no matter what

When I’m stuck in this nothingness by myselfI’m just sitting in silenceThere’s no way I can make it without Your help

I won’t even try itI know You have Your reasons for everything

So I will keep believingWhatever I might be feeling

God You are my hopeAnd You’ll be my strength

Anything I don’t have You can give it to me

But it’s OK if You don’tI’m not here for those thingsThe touch of Your love is enough on it’s ownNo matter what I still love You and I’m gonna need You

Yours Truly.....

I am a 34 year old wife and mom of 6. This journal was started to chronicle our adventures with our daughter and the treatment of her rare epilepsy. However, while it was written, it became a journal of our everyday lives as well. Hope you laugh, cry, and think as you read....I sure did :)